WOW Did Not Expect This! :(

I am so sorry to hear that; must have been very hard to digest suddenly being told it's stage 3. I definitelly think you're entitled to a pity party. It sucks thinking that the original surgery was the end of it, only to have to face this 3 years later. Since this tumor is a different type than what you originally had ((I assume you had clear cell?) I'm not sure a complete nephrectomy would have done anything as it doesn't sound like a recurrance of the original cancer. I'm sure they'll sort it out and the one good thing is that they did remove it all and it's not gone anywhere outside of that area. So hopefully with careful and frequent monitoring this time it really will be the end of it. You're in my thoughts and prayers, Bonnie.

jason.2835 said:

WOW, weird!

Bonnie,

That is pretty weird... hopefully the big guns at Johns Hopkins can classify it as something nonaggressive.  The more I hear from people that had partials, the more that I feel fortunate that they just clipped the whole thing out for me last year.  I'm really hoping that this comes back as something positive.  Like you said, it could be worse... Now that it is truly "all out," you can soon move on from it.

- Jay 

What scares me is how these follow up scans we get after surgery keep missing growths until they’re as big as a golf ball and invade neighboring tissues and glands. Why didn’t the routine CT scans pick it up when it was still very small and non-invasive? I’m starting to lose faith in the whole radiology profession L

APny said:

I agree. I don’t think every

I agree. I don’t think every other year is good enough. I think if radiation is a concern with frequent CT scans then an US every six months should be minimum follow up care for even stage 1. My last US picked up a sub-centimeter cyst on my kidney which we’re now monitoring so it’s not like it’s insensitive to small growths.

I would like to know, specifically, what the risk of secondary cancers is as it correlates to # of CT scans. Maybe that would be a good way to make an objective, individualized decision on the matter rather than just hear "radiation is bad, don't get much". 

sblairc said:

I also ask this question

I would like to know, specifically, what the risk of secondary cancers is as it correlates to # of CT scans. Maybe that would be a good way to make an objective, individualized decision on the matter rather than just hear "radiation is bad, don't get much". 

I think that people need to not worry about scan frequency. Bad effects take years to develope. Cancer is going to be much more harmful if it isn't properly identified and treated as soon as possible. Everyone prays for being NED and wants to be treated conservatively. Always more worried about radiation. I think it is a good idea to find mets before there are 20 of them. Treatment options are greater. If things get out of control, the risk of a shortened life is much more serious than the risk of bad teeth and hair loss in 20 years.

BTW, at this point I can only estimate. They say a CT scan is like having 400 chest x-rays. That is scarey. Since 2011, I have had around 40 Ct scans. And all with contrast. And 1 kidney. 40x400=16 thousand x-rays. When I die, it will be from the cancer. Not from diagnostic studies. I don't care if someone is stage 1. ALWAYS get thorough and frequent scans with contrast. Better safe than sorry.

But this is only my opinion.

foxhd said:

frequent scans

I think that people need to not worry about scan frequency. Bad effects take years to develope. Cancer is going to be much more harmful if it isn't properly identified and treated as soon as possible. Everyone prays for being NED and wants to be treated conservatively. Always more worried about radiation. I think it is a good idea to find mets before there are 20 of them. Treatment options are greater. If things get out of control, the risk of a shortened life is much more serious than the risk of bad teeth and hair loss in 20 years.

BTW, at this point I can only estimate. They say a CT scan is like having 400 chest x-rays. That is scarey. Since 2011, I have had around 40 Ct scans. And all with contrast. And 1 kidney. 40x400=16 thousand x-rays. When I die, it will be from the cancer. Not from diagnostic studies. I don't care if someone is stage 1. ALWAYS get thorough and frequent scans with contrast. Better safe than sorry.

But this is only my opinion.

Lasr year I let them do U/S instead of ct scan because that is all my urologist would do .  THis year my onc said she wanted ct scan and no U/S cause they are not a good test for kidney cancer.  She said if it does pick anything up its too far gone.  So I called my doc office and told them onc wanted ct scan instead of U/S this time and it was 2 weeks later that a resident called my back and said why are you insisting on ct scan?  you get so much radiation from scans.I told him what onc said and he said U/S was good, so I told him if they didnt want to do it that onc would.  So a week later i got my appointments in mail to have ct scan with contrast.  Was supposed to been last week but I got a blood clot in my groin area where hip surgery was done 2 months ago.  Now on all these blood thinners.  Been real down for over a week now. Seems like I fix one thing and 2 more come aboard LOL.   So CT is this thursday May 7th.  Appreciate your thoughts, and some good karma.

brea588 said:

Fox

Lasr year I let them do U/S instead of ct scan because that is all my urologist would do .  THis year my onc said she wanted ct scan and no U/S cause they are not a good test for kidney cancer.  She said if it does pick anything up its too far gone.  So I called my doc office and told them onc wanted ct scan instead of U/S this time and it was 2 weeks later that a resident called my back and said why are you insisting on ct scan?  you get so much radiation from scans.I told him what onc said and he said U/S was good, so I told him if they didnt want to do it that onc would.  So a week later i got my appointments in mail to have ct scan with contrast.  Was supposed to been last week but I got a blood clot in my groin area where hip surgery was done 2 months ago.  Now on all these blood thinners.  Been real down for over a week now. Seems like I fix one thing and 2 more come aboard LOL.   So CT is this thursday May 7th.  Appreciate your thoughts, and some good karma.

Aww Brea, I feel for you.

Glad you could advocate for yourself.

Remember, WE will walk along side you if you want...

Let us know how you are doing.

Sending you a hug filled with love, care and healing energy!!

Jan

foxhd said:

frequent scans

I think that people need to not worry about scan frequency. Bad effects take years to develope. Cancer is going to be much more harmful if it isn't properly identified and treated as soon as possible. Everyone prays for being NED and wants to be treated conservatively. Always more worried about radiation. I think it is a good idea to find mets before there are 20 of them. Treatment options are greater. If things get out of control, the risk of a shortened life is much more serious than the risk of bad teeth and hair loss in 20 years.

BTW, at this point I can only estimate. They say a CT scan is like having 400 chest x-rays. That is scarey. Since 2011, I have had around 40 Ct scans. And all with contrast. And 1 kidney. 40x400=16 thousand x-rays. When I die, it will be from the cancer. Not from diagnostic studies. I don't care if someone is stage 1. ALWAYS get thorough and frequent scans with contrast. Better safe than sorry.

But this is only my opinion.

my husband has had mega CTs and lots of cyber knife radiation. The risk of a secondary cancer is definitely high but it takes about 30 years to develop. 

Balance that with missing a metsstasis from kidney cancer is a no brainer.

Sarah